The sea hath no king but God alone - Dante Gabriel Rossetti

We had a beach day today, it was lovely. The sun was out, there was a gentle breeze and the only cloud on the horizon was the man next door. The sight of him in Speedos (again!) was more like a total eclipse than a cloud but we did our very best to ignore him. The beach stretches on as far as the eye can see, so when we went down to the beach and spotted him in the sea we took a brisk walk in the opposite direction and we found a nice section of beach all to ourselves.

Robbie sat and watched while I wandered around taking photographs. He was enjoying the sun and for the very first time this holiday he allowed me to take a photo of him. He is very unhappy with his hair at the moment because he was so busy before we came away that he didn’t have time to have his hair cut. Hopefully we will put that right in the next few days .


This evening we popped into Tesco for some milk, but Robbie really struggled to walk around the shop, the pain was almost beyond endurance and it has continued to be really bad all evening. He tries so hard not to make a fuss, but you can see that he hardly knows how to move. I wish I could do or say something to make him feel better, but it is usually better to say very little and not to make a fuss, the last thing he wants is sympathy. He will have to go back to the doctor when he gets home, he can’t go on like this.

'The Norfolk landscape sends a shiver through my soul....' - Raffaella Barker

Our holiday in Norfolk had been planned long before our recent woes and despite the huge black cloud of worry hanging over us we decided to go and make the most of the peace and freedom that we always find in Norfolk. These things never work out as planned and before we could pack and get ready for our holiday we had to address the pressing issues that were crowding into our week. Robbie had important deadlines to meet at work, but he also needed to see the GP urgently, and just to confuse matters further he had to take time out of a very busy week to deal with three totally intelligible letters sent by CMEC/CSA which no one dealing with his case could explain. They couldn’t even tell who had sent the letters or why, I in these days of austerity I can’t help wondering why a government agency would send out three different letters to the same person on the same day in three different envelopes and then waste hours of staff time responding to frantic phone calls from intelligent people who are totally baffled by the correspondence. What I wonder has happened to plain English and what on earth has happened to customer service?



Robbie arrived home from work at 11pm on Friday evening; I was tired, frustrated and still packing. Robbie was so tired that he was like a zombie and so challenging that if I hadn’t sent him upstairs to sort his clothes out I might have harmed him! It was heading towards 3am when I went to bed and Robbie was even later because he was dealing with final bits and bobs of work that had to be done before we could go on holiday. I knew that would fall asleep but I was too tired to wait for him, in the past Meg would have woken him up and sent him to bed when she got sick of his snoring, but now he had a stark choice, find his own way to bed or stay put.


The alarm woke us at 6am and ‘sleeping beauty’ reluctantly plodded off to make a cup of tea. Within half an hour I was up, washed, dressed and packing the car. I wanted to be on the road by 8am, but Robbie trotted around in a state of undress and showed a marked reluctance to get himself organised. He still had to finish off some bits and bobs at work and this was delayed further by computer problems. The clock ticked on, 8 o’clock came and went and by 10 o’clock a near naked Robbie was still messing around with work matters and I was finding it increasingly difficult to keep my temper. I finally chased him off to get ready and at 10.50am I went to sit in the car to wait for him, at least I could listen to the radio while I waited. At 11.30am he came out to announce that he was on his way before scuttling back in to do a few last minute jobs. At 12.OO I was parked outside Marks and Spencer’s waiting for Robbie to buy himself a coffee and a breakfast baguette. Then at long last we were on our way.


Considering the late start we had a reasonable journey and made good time. Before we had even left Northampton Robbie did his usual trick of squealing with delight at something that he had seen from the car. This time it was not a train, it was two traction engines in the car park of the rugby club, he was very disappointed that I refused to stop for him to take a closer look. One day he will cause an accident by shouting out like that. I got my own back on him later when I told him that I had caught him out in a bit of mischief (yet again), it is one of the few occasions that I can recall Robbie being completely speechless. He should know by now that I don’t miss much!


We arrived at about 3pm and began the exhausting process of unpacking and putting everything away. I was exhausted and all I really wanted to do was to make the bed and crawl into it, but suddenly we were thrown into panic mode – it seems I had forgotten to pack the coffee! Robbie was very good, he managed not to stamp his feet, but the arms were folded and the bottom lip was sticking out as if he was a sulky toddler. So, before the unpacking was completed we had to get back into the car and head for Tesco in order to find the correct brand of coffee. By then I was far too tired to contemplate cooking, in fact I wasn’t even sure I was awake enough to eat anything, but Robbie’s rumbling tummy led us to the fish and chip shop. I found that I was hungry after all and I managed to clear my plate before sleep finally caught up with me.

Time For Action

Things tend to creep up on you without you taking much notice until one day it hits you like a thunderbolt that something is badly wrong and things can't go on the way they are. That is how it has been with Robbie's pain, it has always been there and it has always worried me, but Robbie hates it when anyone makes a fuss. so I have got used to noticing a lot but not making a big deal of it. None of us see ourselves as others see us but when Robbie looks in the mirror he sees Superman staring back! Thankfully it doesn't involve him wearing a skin tight outfit with with his 'smalls' over his tights - but he thinks that he has to cope with everything without complaining and without asking for help. This is especially true when it comes to coping with the pain and problems caused by spina bifida. He doesn't like to dwell on it, as far as he is concerned what can't be cured must be endured. The problem is that this approach only works while the pain is manageable, but it had become unmanageable and just coping with everyday life had become an ordeal.


Getting Robbie to see the doctor was easier said than done, but I wasn't ready to take no for an answer and he was in so much pain that he knew he couldn't go on like that. So on Friday morning Robbie and I went to the surgery to explain the situation to the doctor. His company allow casual dress on Fridays but as we walked across the car park to the surgery door I wondered why he had chosen that day to wear see through Converse with vivid blue, yellow and pink socks, jeans and a Star Wars t-shirt. The doctor was lovely, she listened and asked questions and she could see that he couldn't cope with the pain. She wanted to see the range of movement he had in his legs and I had to suppress a smile when she got him to lay on the table and had him waving his legs around like a dying fly. She could hardly miss his psychedelic feet and the look on her face was priceless. 


My hidden smile was replaced by a broad grin when the doctor said that she thought that it would be possible to manage the pain. She explained that the pain will not go away but there are several types of medication that can dampen the pain messages coming from the nerves to the brain. She has prescribed medication with a view to him taking it long term. It will take up to six weeks before he will experience the full benefit, and it will have some side effects, but it was such a relief to have a long term plan to deal with the pain. Robbie's sense of relief was even greater than mine, he even thanked me for making him go to see the doctor. There are no quick fixes and the pain will not go away but the medication will make a huge difference and hopefully Robbie will be able to enjoy life again.

Can't Make it Better

I am so worried about Robbie. His legs and back have been causing him so much pain recently and I don't know what to do to make it better. Last night he didn't know what to do with himself, he couldn't sit down, but he couldn't stand up or walk around comfortably either. He described it as a constant unbearable throbbing and it made him really bad tempered. The most frustrating thing is that all the doctors can do is offer stronger combinations of pain killers but it doesn't work. I want him to go back yet again to see a consultant, there must be a better way to manage the pain, but Robbie seems to have given up hope of getting it sorted out. He says that they do tests and more tests but they never make it any better. Last night he didn't come to bed at all because he was too uncomfortable and he just couldn't settle. He can't go on like that!

Making Life Complicated

Robbie has forbidden me to write about his back - and you certainly don't want me to write about his front! So you will just have to guess why I absolutely insisted that he had to go to the doctors earlier this week.

We are lucky because the doctors at our surgery are excellent, but since Tony Blair messed around with appointment targets a few years ago it has made the whole process of getting an appointment much more complicated. The theory is that it should be possible to book an appointment several days in advance, but every time you try there are no appointments available, so yet again Robbie had to get an 'on the day' urgent appointment. They have a state of the art phone system now, when you ring it tells you where you are in the queue and you have to sit there waiting listening to advice in swine flu and other medical services awaiting your turn to speak to a human being. Robbie started at 29th in the queue so by the time he spoke to the receptionist he had almost lost the will to live. The appointment line opens half an hour before the surgery opens and we live close by so it is usually possible for him to get an early appointment and then I rush him across town to get the train so that he is not too late for work.

He should have gone for a follow up appointment long before Christmas, but he put it off because he had too much work. He makes me cross, this is really silly, if you have a car and don't maintain it properly it will very soon breakdown completely and the same is true of our bodies, if we don't take care of ourselves we can do lasting damage. So why do I have to drag him kicking and screaming to the doctors, and when he gets there why does he have to be so macho and make out that he can cope! I have never known him to be in so much pain before, it is making every aspect of his life more difficult and he really has to stop acting like superman and start dealing with it sensibly.

Waiting For the Boots

The snow is becoming a real problem, the pavements are treacherous and only the main roads have been gritted, so the other roads are like ice rinks you take your life in your hands when you drive. Yesterday I took Sam to see the doctor, the roads leading to the surgery were really scary, but we got there in the end. Sam's severe headaches are caused by concussion, when he was so badly kicked and punched in the head his brain was badly shaken around and according to the doctor it will take weeks for the headaches and other symptoms to settle down. It makes me so angry that those thugs could do that to a younger lad and cause so much pain and upset.

Robbie had a 'man stress' yesterday evening because the Dr Marten Boots that I bought him were delivered while I was at the doctors and I had to rearrange delivery. They will be here today so it is not so long to wait, but he is not the most patient person and he found the hardship of waiting an extra day very frustrating. I wanted to buy him Dr Martens for Christmas but I wasn't confident that I would make the right choice, so I let him choose his own. He spent days looking at the various options and he found it very hard to decide what to buy, but I think he enjoyed the experience.

An Extra Leg?

I found out why Robbie has been so impossible recently, he is worried. He is having numbness and pain in part of his hand, until now the numbness has only been in his feet and legs. When he told me I thought it may be something like carpel tunnel syndrome, but the symptoms don't match that. He will not go to the doctors to find out what is causing it, so his imagination is on overtime. Why do men make everything so complicated?

I explained to Robbie that I was very tired and that when he wakes me up at night I can't get back to sleep. I even warned him that if he woke me up again he would need to run very far and very fast! By the time he came to bed at about 1am I was asleep, but he was talking loudly as he walked into the bedroom. This time he was accusing me of stealing his socks! At the weekend when I was sorting and folding the clean washing I paired up and delivered at least eight pairs of socks; so unless he has recently grown an extra leg he should have enough socks to last a week! I didn't argue with him, I was too tired. Thankfully I was so tired that I went back to sleep fairly quickly.

Avoidance Tactics

When it comes to getting one of the cats to the vet I have to be very cunning they know exactly what the word 'vet' means, they can even spell because they understand even if I spell out the word 'V E T'. Meg the dog just turns into a nervous wreck but the cats are more cunning Oreo tries to sneak outside and then heads up the highest tree he can find, while Dave simply makes himself invisible,he is an expert on hiding and nothing will entice him out. These challenges are nothing compared to the difficulty of getting Robbie to go to the doctors. He doesn't rush out of the back door and head up the tallest tree he can find, but his avoidance tactics are just as effective. Last week he promised me faithfully that he would go to the doctors but he didn't make it, this week he has been ducking and diving and insisting that he is far too busy at work to go to the doctors. He has been having acute pain running down one arm and it is becoming more frequent, so I am not going to let him mess around for long. If he doesn't see sense I will have to send someone out with a tranquilliser dart like the ones they use on chimps! One way or another he is going to the doctors.

The Finger

I don't like the fact that the snow hasn't completely gone, I am worried that there may be more to come. I could really do without the added complication of snow this week.

Despite the West Coast Mainline problems and the snow Robbie had a fairly uneventful journey to work and his return journey was OK too. He even managed to stay upright, despite the very slippy pavements near us. Robbie has a poisoned finger and it has been causing him pain for days. Tonight I finally got him to hold his finger in hot salt water, it was obviously painful but it will have done him good. I am going to dress it tonight to try to draw the poison out, but I am worried that there may be a splinter or something in it. If it doesn't improve in the next few days he will have to go to the doctors.

So Frustrated!

I am so frustrated!! On Friday my asthma started to get really bad, I couldn't breathe I just kept coughing and coughing until I choked, it was horrible. As the weekend went on it got worse, I can't sleep because of the coughing, and not being able to breathe is scary, it is even a struggle to talk. I don't go to the doctors very often, but after a difficult weekend it was starting to feel out of control and I was worried that it could be bronchitis, so I really needed to get it checked out. I have to take Sam to school so Robbie rang the doctor for me as soon as the appointment line opened at 8am. He was put into the queueing system and when his call was answered there were no appointments left. In the end I had to have an appointment as an emergency and even then it is with the prescribing nurse not with a doctor. It never used to be this difficult to see a doctor, we just had to ring and we got an appointment the same day, then Tony Blair imposed some targets to make the system work better and surprise surprise, it has been a disaster ever since!

So, I am sitting at home waiting to go to the doctors and wondering how to stop the cat from climbing up the Christmas tree!

Ticks in Boxes

I didn't write much about the weekend mainly because I was on my own for most of Saturday, Robbie and Sam left early to spend the day with Robbie's dad and step mum in Norton Canes. It gave me a chance to catch up with some housework and to venture into the garden to tackle the hedge. Sunday morning was less busy and I was determined to relax and listen to The Archers Omnibus on the radio. You can always rely on Robbie for a Sunday morning quote and last Sunday was no exception. I hadn't seen much of him all week so it was nice to wake early on Sunday morning and know that we were in no rush to get up. We could have talked about anything under the sun, we could have just been quiet and enjoyed the luxury of time, but Robbie talked endlessly about the wonders of his dad's new cheese grater. Surely there is only so much anyone can find to say about a cheese grater - unless you are Robbie of course!

The Galaxy went back to have the break pads checked yesterday, they were fine but there is an intermittent fault on the sensor so I have to put up with the warning light and the very annoying alarm sound until it becomes a constant fault, then they should be able to identify which sensor is causing the trouble. I'm sure that car has a gremlin in it!

Sam went for his hay fever medication review at the doctors. It was such a pointless exercise, the nurse didn't ask anything about his symptoms she measured him, weighed him and asked if he smoked - no way will he smoke! How ridiculous, there would be some point to asking if it was part of a message to prevent young people from smoking, but it was just a tick in a box on the computer. That is the first time in his life that Sam has been weighed or measured at the doctors without screaming the place down. When he was younger he was extremely uncooperative when it came to developmental tests. He took particular exception to the wooden giraffe measuring stick on the wall, he wouldn't go near it and he screamed so much that people must have thought he was being tortured. Maybe he is like me, I object to being measured and monitored, and these days there is so much bureaucracy involved in health care that I don't feel like an individual anymore. It isn't the doctors fault, it is the system that is imposed by the government.

One Step Forward and Two Steps Back

I am beginning to think that the world is conspiring against me. Why do the little tasks turn out to be so complicated and time consuming? I had to take the Galaxy to be serviced last week, this week it passed it's MOT and I was pleased that it was ready to go on holiday. Two days after the MOT the safety warning light came on to tell me to check the break pads, so it is going back again on Monday! The expense is bad enough but the inconvenience of arranging lifts to get to an from the garage is even worse.


Meg also has an appointment on Monday, she is going to the vet to get her booster injection and the kennel cough treatment. They put the kennel cough stuff up her nose, but the vet ends up wearing most of it because it always makes Meg sneeze.


On Tuesday morning Sam is going to the doctors for a medication review. The Micra is having it's MOT on Thursday and I am going to the hairdressers on Friday. I still need to book a medication review for Laura, she has to see the GP rather than the nurse for her review, because she has Pityriasis Lichenoides Chronica, an unusual skin condition that requires a lot of medication and she also takes medication for migraine. Dave the cat will also need to go back to the vet very soon because his paws are getting sore again. With all that to fit into an already busy life I think I am in for a stressful week.

On Friday I went to the doctors to drop off our repeat prescription requests and to book the medication reviews for Laura and Sam. The girl on reception informed me that Sam was very late for his review and was therefore not a priority. They use the date of birth as a review date, Sam's birthday is in December - who needs hayfever medication in December? They wouldn't thank me for taking up their time on that during Christmas week! I couldn't get an after school appointment for Sam until mid July so he has to miss an hour of school on Tuesday morning just for the nurse to tick a few boxes. I couldn't get an appointment for Laura at all, she has to see the GP for her review rather than the nurse because she is on beta blockers for her migraine and she has loads of medication for her skin condition. I have to ring at exactly 8.30am on Monday when new appointments wil be released. Until a couple of years ago the system worked quite well, you rang on the day and you got an appointment. Then Tony Blair decided that we had to be able to book ahead, the government did their usual micro management thing and imposed loads of new rules so now it is worse than it has ever been!

Robbie rang me at lunchtime on Friday to ask if I would mind picking him up from the station at 3.50pm because he had booked a hair appointment and he wouldn't be able to get home on time otherwise. I agreed and I was just pulling into the station when Robbie phoned, I couldn't take the call but when I had parked I found that he had sent a text with a grovelling apology telling me that he had given me the wrong time and he would be there an hour later. There was no point going home, by the time I got there I would have to turn around and go back again. It was pointless to get cross so I just sat there and waited. It was one of those days where I had rushed around all day but I ended up further behind than when I first started!

Pants and Pasta 10.01.08

Robbie's new boots arrived yesterday, I struggle to get over excited about shoes of any kind but Robbie was on cloud 9, I dread to think what he would be like if something really exciting happened. We had a bit of a fashion parade, he tried on his new suit and his new boots, he looked great and he was very good at the hand on hip pose and the twirl as he walked across the room and turned to come back again. If he hadn't built his career in the railway industry he would probably have made a very good hairdresser!

This morning Robbie took his foot to the doctors, he insists that it was his boots rather than his wayward leg that caused him to fall this time, but he is still awaiting some tests and the GP said he would chase up the appointment. I guess should expect Robbie to have disobedient feet, after all every other bit of him is unconventional to say the least! Hopefully we will soon find a way to keep him the right way up - and pavements everywhere will breathe a sigh of relief.

After the doctors appointment Robbie had almost an hour to wait for his train to work, so he bought me a coffee (well, tea in my case). We rarely have time to ourselves like that so it was nice. Robbie dominated the conversation with a discussion on the relative merits of different brands of mens underwear. He provided a detailed description of his favourite pair of pants, and his second favourite pair, and the advantages and disadvantages of sports underwear. I was spared any more detail because he had to check the time. He only had a few minutes before his train was due, plenty of time for another little gem. He asked if I knew that Morrisons were the fresh pasta retailer of the year!? I don't know how I have coped for so long without knowing that! Where has all the romance gone?

Warning 28.09.2007

Robbie is off to the doctors this morning, to say that he is going very reluctantly is a massive understatement, kicking and screaming would sum it up more accurately! We have to find a way of keeping him upright before he ruins all his clothes, I don't suppose it is easy when he doesn't have a matching pair of feet. As a last resort I guess we could get him some diving boots to keep his feet firmly planted on the ground. I have to do something because he has rolled his trouser leg up so often to show off his cut knee that people will start to think he has joined the masons!

On the subject of injury, Robbie has come very close to adding to his selection of wounds. I have never considered him the epitome of sartorial elegance, in fact I would say that his fashion sense is unique, quirky even. I have always accepted that Robbie is Robbie and with the exception of offensive T shirts and Walsall football club shirts, I have made no comment on his outlandish taste. Robbie on the other hand has always had an interest in women's clothes, it comes in handy at times as he will happily go out and buy clothes for me, even underwear - and I hate shopping. Recently his interest in women's fashion has taken a new and less welcome form, he seems to think of himself as the next Gok Wan (well they do have the same taste in glasses!) and his comments and 'helpful' advice about what I should be wearing have become rather tiresome. In fact he has ignored all warnings and any further comment will risk life and limb! I toyed with the idea of vandalising his favourite shirts, but I hate waste, so itching powder in his smalls may achieve a more satisfying outcome! Robbie be warned!!!

http://en.wikipedia.org/wiki/Gok_Wan